9 days post op- Treatment #22

 Elliot’s healing up really well. He had a couple tiny scabs but nothing bad at all. 

He’s excited for Halloween tomorrow! 

Elliot’s Treatment #22

 Whew! What a whirlwind of a year and a half since I last posted here!

Elliot was scheduled for this procedure in September but we canceled because we have been in a worldwide pandemic since March 2020. Covid 19 has swept the planet causing an unfathomable amount of death and destruction. 

Since anesthesia weakens your immune system we opted to wait until now to go back for a treatment. His treatment was October 20th, 2021.

Elliot did great through the whole thing. The nurses are always amazed at how easy going his is, both pre and post op. We had an early check in (7:15am) and didn’t see many others there this time.

Today is 6 days post op and he’s healing really well. This time he didn’t get any large scabs which I’m thankful for. He hasn’t complained at all about it being uncomfortable aside from the swelling the morning after. 

Since I have haven’t updated in a while, he has had an ophthalmologist appointment recently also and that went very well! He’s now on a yearly check up schedule. Yay!!!

Treatment #21 Post Op Photos

Elliot's been battling a cold, along with mom, for the past week so "updating the blog" kept getting pushed to the back burner.  It's been almost 3 weeks since his laser surgery for his port wine stain. I haven't updated regularly but I will add all of the photos here. He seemed to swell more this time, and it last for a few days. He healed up really well though. He did get a few light scabs down the bridge, and just under, his nose. He still has some redness from the treatment but his spots are mostly gone. Within the next couple of weeks we should see how much clearance he got from this one.

4 days post op

10 days post op

12 days post op

20 days post op

I'm not surprised that it's taken so long since it was a really heavy treatment. I'm looking forward to seeing what happens with the Prima laser next month.

xoxo

Treatment #21: 1-3 Days Post Op

Laser treatment #21 of Elliot's Port Wine Stain is in the books. Elliot was a champ through it all, as usual. Our plan was to try the new Prima laser this time, but unfortunately it wouldn't calibrate correctly so Dr. Orringer was unable to use it. The Prima is the first laser improvement since Elliot was born. It's supposed to target the Port Wine Stain deeper and I've heard that healing time is a little shorter. I was pretty bummed that it wasn't working that day. I'm actually scheduling him for another treatment in April to give it a go.

He said it was pretty painful when he woke up. The nurse asked his pain level and he said a "7" (which I'm going to say was inaccurate) but they gave him a dose of fentanyl. I nearly died, haha. I didn't even know they use that for pain management in children! Yikes.

Today is 3 days post op and he hasn't complained at all about the pain. He said it doesn't really bother him. The swelling is still there today but they did a REALLY heavy treatment.

Mommy and Elliot before he went back

Aunt Lisha is our rock on treatment days

Elliot always wants Chipotle after <3

In the recovery room

Day 1 Post Op. Lots of swelling. 

Day 2 Post Op

You can see in the photos how much darker the spots got over the first couple of days. It was a really heavy treatment. I wish I had asked what joules it was at. I'm praying he doesn't get bad scabbing. 

His swelling is better today but he still doesn't have much of a waterline. Also, just check out that "man bun" 😍😍😍 #HairGoals

Day 3 Post op. Spots are darker, swelling is going down

Side view

I'll update again in a couple of days with more healing photos. As always, if you have any questions about Port Wine Stains or laser surgery feel free to ask.

xoxo

Update 2019

Just wanted to post an update about where we are at. Elliot hasn't had a treatment since September which is fine since we're in the maintenance phase currently. Our Blue Cross insurance is still denying coverage so we're reapplying for Children's Special Health Care Services to help us. Without insurance the cost of laser surgery is just too far out of reach. I spoke to his specialist today and she said his last surgery was billed at just over $14,000. >.<

He's doing really well and I'm happy with where we're at. There is a new laser on the market called the Prima which is able to target deeper than those currently available. Unfortunately the University of Michigan doesn't have plans to add one at this time. I'm hoping they'll jump on board soon because I'd love to see if we could get more clearance with the new laser.

Homeschooling is going really well and I'm so impressed with Elliot's math ability. He's currently working a grade level ahead, which is the biggest perk of homeschooling! I love being able to meet the kids where they're at academically. We're on spring break this week and we're enjoying the outdoors and relaxation.

He needs a recheck with the ophthalmologist soon so I need to get that scheduled. That's about it!

We colored Easter eggs today! This isn't a great quality photo but good enough to see the PWS. :)

Treatment #20: Post-op days #5 & 7

The week has flown by, and Elliot is 7 days into his recovery period. His spots are healing nicely and he had very minimal scabbing. He had a small spot next to his nose, a small spot next to his top lip, and a small spot under his eye. They are very small compared to scabs he's had in the past, and I'm very pleased with this treatment. 

Usually recovery means a lot of downtime but this time has been different. On Tuesday Elliot went to his Ninja gymnastics class, with a face full of spots. He walked in with his head held high and I watched his demeanor stay the same throughout class. One child asked him what happened, and he told them he had laser surgery. That's it. So matter-of-factly. I could not be more proud of him.

Tomorrow we head to co-op at the local library. We are studying geography with Mrs. Linda this year, and a whole room full of other kids! We're learning about Africa and will begin working on our African culture project at home this week.

Elliot built a Lincoln Log mansion at Papa's house (Day 5 recovery)

Day 7 recovery

xoxo

Homeschool Journey

In January of this year (2018) we made the decision to pull our kids out of public school. Homeschooling was a dream of mine when I was a new mom, but quickly lost that drive when I had my hands full.   

It’s crazy how life happens sometimes. We always have a picture in our head of how things are supposed to be, but they rarely turn out that way exactly. Oftentimes we fight against reality to try to shape our lives into that image in our head. Sometimes we just go with the flow. I’ve learned through the years that it’s usually easier to just go with the flow and adapt, but it isn’t always easy. Twelve years ago my first child, Emma,  was born. I had grandiose ideas of how it would look to be her mother. I pictured myself as the apron-wearing mom that was shuffling between girl scouts and soccer while looking like I slept for 8 hours the night before. Ha! While we certainly had snippets of times like this, reality was nothing as I had pictured. Instead I was chasing a hyperactive two year old through stores, throwing my hair into messy ponytails and crossing my fingers that the clothes I pulled out of my closet matched as I raced to pull her off of the fridge….again. 

When she was a baby I dreamed of homeschooling. When she was four I physically carried her to the bus and handed her over with a deep sigh of relief. I couldn’t wait for four hours of silence! Fast forward to last year. We had three kids and life was going smoothly. Our kids were older and life was starting to slow down. There was less chasing and more relaxing. I began to toss around the idea of homeschooling again. Then summer vacation came and the kids were rambunctious and by the time August arrived I was happily driving them to school at 7:30 am. “I could never homeschool. I’d lose my sanity. I’d fail them miserably and the world would fall apart.” Those were a few of the fears that popped into my head every time the idea of homeschooling came up. 

Then, in January, a life changing event happened. My nephew had a seizure, and many subsequent seizures, at school and he was rushed to the ER by ambulance. Our local hospital transferred him to a pediatric ICU unit an hour away where he spent the next 5 days of his life. Our world stopped spinning. Everything that was happening came to an abrupt halt as we sat in the hospital praying and hoping he’d open his eyes again. The day this happened I had my grandma pick up my children from school, and I never sent them back. It was while I was sitting there in that hospital, watching my nephew fight for his life, that it hit me how quickly the world can change. Everything we’ve planned and everything we strive for can hang in the balance. Miracles happen. Five days later he was on his way home, smiling but with a long road ahead of him. 

While fear may have been the driving factor that day, it’s been nine months since we began

homeschooling and it is going so much better than I every dreamed of. My sanity is still in tact and my kids are thriving in their new environment. Would it have worked as well a year ago? I’ll never know but I don’t think so. I think the choice was made at the right time for us for a reason.

One of my fears when Elliot was little was sending him to public school. What would kids say? How would they treat him? I know I've talked about this in previous blog posts, but I had a crazy fear of sending him off into a shark tank. However, Elliot adjusted so well and so quickly. He often had people ask "what happened" to his face, and he would usually say "those are my spots" even when he didn't have his "spots" from his treatment. He has fielded all of these questions like a champ. He's always exuded confidence because I raised him to. Even when my own confidence was lacking I'd pretend to be the most confident person in the world in front of him. 

When we made that decision, I started to feel that fear again. Yet this time it was in the opposite direction. Will this affect his confidence in the future? Will he still be able to feel "normal" as he grows without a class full of peers that already know he has a birthmark? A couple weeks ago Elliot and his brother Ethan started Ninja Gymnastics class. He said to be after: "Mom, someone asked what was on my chin. So I wiped my chin but nothing was there. Then he said 'no, i mean your cheek' and I said oh, that's my birthmark. Then he said 'Were you born with it?' and I told him yes." And it was that simple. A normal conversation between two normal boys and he handled it like he always has. 

xoxo